Interviews with Sam and Georgia for Are You Autistic?
Q: Can you explain a little bit about the programme that you’ve made?
Sam: It’s essentially a documentary on autism where we follow two people called JP and Jo who think they might be on the spectrum and we follow them on their journey to getting diagnosis. Within that we look at some traits of autism, like sensory overload, stimming, unpredictable change… we interview Simon Baron Cohen, who is I believe is the leading expert in autism at Cambridge University. We also interview Tim Nicholls from the National Autistic Society about the diagnostic crisis in the UK. There’s also Anna Richardson, who was the other presenter on this, and goes on this journey with Jo and JP, but does it from a non-autistic point of view. And I’m Sam Herne and my co presenter is Georgia Harper.
Georgia: It still doesn’t feel real yet!
S: We are essentially your autistic guides through this TV show.
G: One thing I am particularly excited about and what makes this stand out amongst autism programmes is the sheer number of autistic women. That sadly is something we don’t see very much. Throughout the programme you’ll hear from a range of autistic people from different backgrounds, talking about how autism affects their life and how it’s different for everyone. I think that’s really powerful.
Q: So for those who don’t really understand autism, can you explain a bit about it?
G: It’s a big question. How long have you got? I mean for me autism means that I process the world differently, process information differently, to how a neurotypical person would. Things like sounds, textures, temperatures, big crowds, can be an overwhelming wave of information overload which can then cause shutdowns and meltdowns. On the other hand it means I can always rely on music to pick me up and I enjoy the umpteenth repetition of something more than anyone else I know. I stim, which is my body language and that’s just a way of sensory regulation. I sometimes struggle with sarcasm and metaphor. I am verbal when I am in an OK environment and not having a meltdown. I am quite coherent when I have prepared what I am going to say. But it’s when I can’t plan ahead or when there are unexpected changes, that I become really anxious. Also special interests are one of the massive perks.
S: Absolutely, absolutely. What is autism, in sort of a clarified term? It’s a spectrum disorder, as Georgia so very clearly put. Where there is a breadth, we should definitely be clear on that. There is a breadth of people on the spectrum. There are people who are non-verbal; there are people like myself and Georgia who are verbal but in certain situations we become non-verbal due to either stress or change or loud noise or whatever. We definitely process the world differently. We take time to process. We sometimes struggle socially but that doesn’t mean we can’t have social relationships and friendships. We do discuss this in the documentary, there is a sense of routine so we have a sense so strategy so we are able to plan and therefore get on with our day to day lives as we would do normally. There is the added sense of in some certain social situations how we can struggle to read facial expressions, body language, how if I don’t understand a joke which is the majority of the time, how that manifests into something else. So it’s mainly kind of how we process the world but also then how the world comes with us, as it were. So we’re chugging along as is everyone else but we are chugging along at our own pace.
Q: What are the common misconceptions people have about autism?
S: There are many! Stereotypically we are, I mean I don’t know about you, I can barely do maths. The stereotype is we are all men with no social life who are complete mathematical geniuses. I mean as lovely that would be that is not myself. I mean I am an artist, which is a very different field for obvious reasons. There are the misconceptions that we don’t have a social life, that mainly we struggle to understand emotions. That can happen but I think I can speak for both us, we get by.
G: Because I don’t necessarily have the same emotional responses outwardly that other people do, people think that means I don’t feel emotions, and that’s not true.
S: That’s absolutely not true. Autistic people are some of the most sympathetic, kind, nurturing people I’ve ever met; it’s how they come across. That needs to be said.
G: There are many misconceptions. The idea that you can just tell whether someone’s autistic, you’d be surprised how often autistic people get “You don’t look autistic.” What does autism look like? It tends to be a gendered thing as well, not always. This idea almost trying to catch people out, how they’re faking… something else that bugs me is the “everyone’s a little bit autistic” thing. People that say that are well meaning but it’s quite dismissive. If everyone was a little bit autistic then why is the world built in such a way that is so hostile to autistic people?
G: And as Sam touched on this, the idea that it’s just for men or boys. People think of autism as something that is just for children when obviously those children grow up.
Q: Why are more autistic people being diagnosed now than previously?
G: I think it’s just better understanding. Twenty, thirty years ago autism was unheard of. Even since I’ve been diagnosed I think awareness has improved. The fact that even now, and as this show explores, we’re only really just realising how many women have been missed. It’s just better diagnoses, better understanding, more people thinking about autism and considering autism and thinking about it in themselves or their children or their relatives.
Q: And why do you think it’s important that people get a diagnosis?
S: I think it’s important because they hopefully will be able to get the right support. They will be able to identify behaviours that they themselves have experienced. If a person is stimming or constantly having meltdowns, they might have an explanation. There might be an explanation for that. I think an important thing in the programme is that we talk about a lost generation. That’s a generation that have not been diagnosed or have just gone under the radar. That’s pretty big if a generation has just been completely missed. That might be one of the reasons as to why the numbers in diagnosis are just rising.
G: I think getting a diagnosis or seeking a diagnosis is a very personal choice. There are pros and cons. One thing I will say is there are waiting lists. As we explore in the programme they are unfortunately horrendous and something needs to change. I will say that getting a diagnosis could mean that you access support, although sadly that’s quite lacking as well. It means you know who you are, you have an explanation for why you are the way you are. I think without a diagnosis I would be turning in on myself and internalising some of the horrible things I’ve heard from other people. It’s also about, when you know you’re autistic then you can learn about yourself within that framework and identify what your needs are, what you find difficult however obscure or weird you might think it is, and actually mitigate that and work with your brain rather than against it which makes such a huge difference.
Q: How old were you both when you were diagnosed?
Q: And how did that come about?
S: My parents… I have other added learning disabilities, and we had the support network there, and we had family and friends giving my parents lots of lots of books, giving hints as to what this might be. My mum speculated at the time, then I got diagnosed and it was good.
G: It’s not something I particularly remember. I know it came up through the school and I know my parents had to fight incredibly hard to get me the diagnosis because they kept coming up against the view that, “oh she’s getting good grades, she must be fine.”
Q: And do you think because you were a girl, as well…
G: I wouldn’t be surprised… I know that as a girl I am incredibly lucky to have even been diagnosed at nine. There was a lot of “she gets good grades, what’s the problem?” Not that autism is a problem, that’s just kind of how it’s seen. Actually her grades are all that really all that matters? And when I first got the diagnosis, I have to say I didn’t particularly care that much. It was just a thing that was happening and had been going on for a while and it just didn’t bother me. But it was when I hit secondary school and started to become more aware of my differences and how other people reacted to those differences, which was not always good. I am really glad that I had that explanation that I knew why I was the way I was and that it was not a bad thing. Otherwise as I say I think I would have internalised all that stuff more than I did.
Q: And how do you think being autistic has affected your life?
G: I mean, if I wasn’t autistic I wouldn’t be me. Who knows what decisions I would have made?
S: Absolutely. We have to sort of stick to the positives on this one. I mean there are some negatives, yes. But it can’t go without being said that actually, I hope I speak for the both of us when I say I think it’s genuinely benefitted us because we are able to understand ourselves. We have been able to do things that we wouldn’t do, such as this for example, if we weren’t on the spectrum.
G: If we weren’t autistic we wouldn’t have got involved with Ambitious About Autism. My academic background, my degree is in law, it used to bother me that I couldn’t stand up and confidently make an argument on the spot, but actually I’ve been doing presentations and campaigns for Ambitious for a while now and I genuinely really enjoy it. It’s such a difficult one to answer because I genuinely don’t think I would be the same person if I wasn’t autistic.
S: Absolutely but there’s also you know… I mean I’m an artist and as an artist with autism I’m doing work that can sometimes be autobiographical. I’m a young disabled artist. As far as I’m aware you don’t get many of those and that’s a really positive thing.
Q: What do you do for a living and how does your autism influence your work?
S: I suppose I’m still at university so I’ve yet to experience the wonders of work or the wonders of jobs, but then actually I’m going into the arts and the arts is one of the most competitive, one of the most rewarding but one of the most rejectable careers. It’s so vast and also it’s so tricky because your work might not be as good as someone else’s but hey, that person is exhibiting at a particular level. That’s the thing, I’m finding out that art is more about business than doing your work.
G: Many things are! This is what I found with Law.
S: And it’s about how you present yourself and whether you feel ready enough to say, “Hey, actually, I am an artist and this is what I have but I can do this as my work.”
G: So I have recently started my first ever full time job. I’m working in Parliament as an admin officer in Emily Thornberry’s office which was an amazing opportunity and I’ve really enjoyed it. In terms of how autism has affected my work, again I don’t know if I’d be me without it. I don’t know if I’d make the same decisions. A lot of my work involves dealing with policy emails. We’ll have an email about something I know nothing about from a constituent who clearly has very strong feelings about it. I really enjoy learning and just being able to go away from scratch and come back with “This is what it all means and here is our position”. I really enjoy that side of things. One thing I will say about Parliament, whenever there’s a vote a bell goes off. That’s not necessarily great. Everyone I’ve met so far through work has been incredibly supportive. I’ve just had a really positive first experience in the world of work. Obviously it’s quite a new opportunity, but I’ve loved every minute of so far.
Q: Do you see neurotypical people as being different from you and if so how?
G: Everyone is different let’s start there. It’s a different brain wiring. Just as things that there are things neurotypical people don’t understand about me I don’t understand things about neurotypical people. Why do you say a party starts at seven, and then no one turns up for an hour? Why do you install red men and green men, and then ignore them?
S: Yes, exactly!
G: Why do you go out and sit in the sun on purpose? But also being autistic in a neurotypical people, the world was built for neurotypical people and that means we have to…
S: We have to put ourselves within their shoes.
G: Yeah, by our age we have to adapt to survive.
S: That’s hard.
G: Ideally I’d really want a world where we can just be met halfway. I think raising awareness and acceptance through programmes such as this is a part of that.
S: I do sort of think about this on a daily basis, because I’m the only autistic person in my family, and I see how my family and how my friends, who are all non-autistic, work. I get frustrated with them for doing things that for me would be completely ridiculous. Like, why when you wash or put something in the washing machine do you not put all the forks together, or put all the knives together? Why is it that all the glasses are not lined up in consecutive lines? Things like that. But then also if I had that my way it would be different to them. It’s that kind of thing of, you do get frustrated with how the world works but you can’t fault that.
G: It is just a difference. There’s nothing wrong with neurotypical just as there’s nothing wrong with being autistic. But because we’re such a minority and because our needs have been ignored for so long, whenever there’s a difference, it’s the autistic person who has to change even when that isn’t possible, and that can come at a huge cost. I think things are changing, which is good. I just think that neurotypical people could maybe consider how they might be able to change and meet us halfway.
Q: Do you think the understanding of autism has improved during your life?
G: My understanding of autism has improved during my life. I can tell you that much. I think it’s difficult to tell because as I’ve got older I’ve got more involved in activism around autism. So it’s difficult to tell how much is the world changing and how much is just what I see. I think it is changing. You’ve got a long way to go but it is changing.
S: Programmes like this are very beneficial for that change. I think specifically because obviously we are catering towards an audience, because the majority of people in the programme are female, we are banishing that stereotype already, that autism is a male disability, which is clearly not the case because here we are talking about our disability. Here are four, five, eight other people who are also talking about what they have and we are all female.
G: In terms of things changing, one recent big change that will hopefully accelerate progress is social media. For me, the advent of social media is an absolute game changer. And that’s as someone who is verbal. That allows people who don’t necessarily have massive platforms to still be heard. It allows people who can’t stand up and confidently make a point verbally on the spot to still be heard. It allows people who would get rejected in person because of their body language to be heard. Myself and a lot of other autistic people have really found our voice that way. We’re at the point now where we’ve got autistic communities online. I think that’s a really positive thing and I hope that will accelerate progress. We’ve got a long way to go but that’s a potential game changer.
Q: Why did you want to get involved in making the programme?
G: It shouldn’t be ground-breaking for autistic people to lead the conversation about autism but it is. Too often autism is viewed from the perspective of an outsider…
S: Or they go on a journey and this is what they’ve found, how lovely, happy days.
G: Too often we see autism as how someone who is not autistic experiences an autistic person from the outside. So we see all the ‘mystery behaviours’ and nothing about what the autistic person actually experiences. I’ve been really pleased to see generally in the past few years more of an emphasis on sensory issues, that sort of thing. So I wanted to be involved in this because I think it’s important for autistic people to be leading the conversation. Particularly with how underrepresented women are.
S: Yeah, I completely agree with you on that. I also think as well we are broadcasting this world to an audience who might not necessarily have that level of understanding yet. They have the awareness but they don’t have the understanding. And that’s what we hopefully are trying to cater towards, and that’s as well as those people who are possibly undiagnosed . They might be able to see some of themselves in how we present and how the programme is filtered. If we can get at least one person diagnosed who thinks they might be autistic, and then hopefully feel proud about that, then we’ve done our job.
Q: What was the experience like?
G: I really enjoyed it on the whole. The crew and the producers have been amazing. Everything they’ve done… we did a day of filming and a day of voiceovers. Everything that they did they explained why. Neither of us have done anything like this before and I think that was really important. They were just really welcoming, really patient, really accommodating. I really enjoyed finding out how things work behind the scenes and all the tiny little details you don’t think about when watching TV. Just how much work goes into an hour of television. I’ve really enjoyed that side of things. I’m really nervous about it coming out and about this being such a big public thing. But I’m really excited as well to finally be able to talk about it.
S: Yeah, it’s been a nice small secret to keep actually for the last few months. It was a great experience and I think even if we don’t get to do anything like this again it will be one that we will remember and it will be one from which we’ve both learnt so much just in terms of how the world of telly works, how the world of media works, what it means to stand up in front of a camera and present whatever the script is. That in itself is amazing. And I want to highlight how the crew were just awesome. They were patient, they were kind, caring and more importantly they wanted to get it right along with us. This was their journey with us as much as ours with them. The fact that they explained everything, literally absolutely everything: where the camera was coming from, where the sound person was going to be, where we had to stand, what we had to say, how long this shot would take. Those small bits like that which made us feel so much more relaxed. We were able then, because of those small details, we were able to give it our best. That was the beauty of it.
Are You Autistic? airs Wednesday 28th March at 10pm on Channel 4